Re: Surgery to take away lymph nodes and clear margins

Day 4 of radiotherapy I 've tired with banging headache & my boob had swollen. Hospital said swelling is tissue around boob.

The End of a naff day I arrive hime from hospital feeling like I need to sleep & my hubby tells me our buyers have pulled out of our sale. I'm devasted I've spent half the night in tears angry, we were moving back to be nearer my family which is what I wanted so much to finish my treatment and start afresh near my loved ones.

It's not meant to be I'm gutted, I'd packed up most if the house before I had my operation as we were expecting to move within the next few weeks. So it's back on market & I'm very miserable 😔😢

Re: Surgery to take away lymph nodes and clear margins

Your birthday is day after mine! My friend was showing a friend of hers my photo on Facebook with my Sinead O'Connor hair, my friend was telling her my story & when she saw my photo she said that's Pauline my chemo friend it's a small world.

My hair feels like baby lamb hair but my hair is naturally curly and all the back at the bottom is curly now 😂

Not sure about my birthday hair yet it depends if it's cold. My daughter's birthday on 14th March & my son is 23rd March and neither were planned I was told I'd never have kids and then two come along in March.

I'm drinking loads water I'm thirsty all the time even waking up in the night guzzling water. I'm going to try go back to the gym next week.

Re: Surgery to take away lymph nodes and clear margins

BTW happy birthday. Mine is 26/03 so we are almost astrological twins. I would go without your wig! Celebrate your new hair. Have you got the “chemo perm” yet? After 12 months, my hair is just starting to grow through not curly. Now it comes down to about the bottom of my ears. A bob is not that far away. Ah chemo, it gives you a different perspective on life! Hope your pain goes soon (does your physio snap your cords - ping!?). Take care. Xx

Re: Surgery to take away lymph nodes and clear margins

Pauline - I see you've had a banging headache today - remember to keep up drinking water - between 1-2 litres a day plus your usual drinks - it really does help. Also, continue with water after treatment finishes. I started to ease off too much and wasn't feeling great so I've upped it to 1-1.5 litres a day and feeling so much better for it.

Re: Surgery to take away lymph nodes and clear margins

MLD is Manual Lymphatic Drainage ie a special type of massage that aims to move lymph fluid around your body and stimulate your lymphatic system to work properly. You can see videos of it on YouTube and learn to do it to yourself to some extent. Dry brushing to move lymph fluid also recommended. There are some useful lymphoedema sites with info about these types of techniques. My consultant says exercise is really important for preventing lymphoedema.Sorry to those with cording - it is ****** painful. It should go away in time though.If you are on radio you are on the home strait and the finish line is hoving into view!

Re: Surgery to take away lymph nodes and clear margins

I'm not bad thanks still on killer physio for cording it's getting better, my armpit is numb but sore at the same time 😡 physio has managed to breakdown some of the cords but as I'm on radiotherapy I'm carrying on with physio until I've finished.

I've done 3rd RT today came home with banging headache & I don't totally feel myself. Boob quote pink this evening, but it bound to ease off later.

My hair looking good I've got a Sinead O'Connor look at the moment 🤣 went to hospital on Friday night with no hat on I felt quite liberated.

Although it's my birthday on 25th I'm debating could I actually go out without my wig on..

Re: Surgery to take away lymph nodes and clear margins

Hellooooo LadiesHow are you all doing? and I don't know what MLD means either, Annig.Pauly - How you doing since your change of nam?. How are your rads going?? and have you yet had any respite from your "cording" pains and complications??Lots of love to everyoneDelly xxxxxx

Re: Surgery to take away lymph nodes and clear margins

I've had bad nerve pain as I've had cording now for 4 weeks. I've been having physio which is great but painfull at sane time. Today I can actually raise my arm over my head but still have so.e pain. I've had bad burning pain from armpit to wrist.

I'm due to start radiotherapy at 5pm today but looks like the snow won't let that happen.. annoying as I was up till 4am unable to sleep and there wasn't any s ow then! Very thick at 6.30am.

Re: Surgery to take away lymph nodes and clear margins

Hi allBizzylizzy - How are you doing following your node op? I'm not an artist, but am passionate about art, so I'm particularly interested to know how things are going for you. I hope like mad, you're work isn't hampered by all this afterwards and settles down without any restriction to it.Annig, Mrs Merton - Hope you're both well tooMuch love to everyoneDely xxxxxx

Re: Surgery to take away lymph nodes and clear margins

Hi - sorry to hear you have to have this done. It is worth it though because i know from experience that the chemo by itself isn’t enough to kill any tumours further up your lymph node system, so the op can save your life. Ask your surgeon whether he is taking out up to level 1, 2 or 3. Everyone has a different number of lymph nodes but the higher the level removed, the higher your risk of Lymphoedema. After the operation you will have a lot of numbness and strange nerve sensations in your underarm and the back of your upper arm. The back of my arm was numb for about 6 months but is ok now. I also got, and sometimes still get, some strange sensations in my arm. After the operation i had cording which is like a string running down your arm - usually you can see the cord. It is damaged lymph/venous vessel. Sorry to tell you it is very painful but it usually goes after a few weeks/months and physio can help a lot. Then you need to do all the exercises the hospital physio shows you to regain mobility. Plus long-term you need to exercise your arm in the right way to reduce your risk of Lymphoedema. I have a very slightly swollen patch above my elbow that I have had since the op and have also experienced slight swelling in my hand. At the moment i use a sleeve when my arm is tired and for any risk activities such as flying and have MLD. That seems to be keeping it all under control at the moment. I know that all sounds scary but other than avoiding lifting heavy weights, i am using my arm completely normally and have a full range of movement and hopefully you will too. But do stay on top of those exercises and ask for physio if you need it.

Re: Surgery to take away lymph nodes and clear margins

Moan away Pauline - it's good to get it out and know someone is listening. I had a situation today where I very nearly lost it.... over my herceptin and the fact the onc wants me to have another echo heart scan before next injection on 1 March! Getting someone to understand was a bl***y nightmare! Thankfully got there in the end! xx

Re: Surgery to take away lymph nodes and clear margins

Pauline - just to reassure you - what you are feeling is perfectly "normal" - not pleasant at all and only those of us who have been through the same procedure can fully understand.

However, with gentle stroking of the "guitar strings" and the correct exercises - you will find relief - but for better relief it won't be for at least 6/8 weeks following surgery.

Even now, 6 months from finishing chemo (I still suffer side effects from), 5 months following surgery and 2 months following radiotheraphy my chest wall is so tight, the ribs under MX site are painful and my underarm is completely numb and if I do too much or not enough exercise - the "orange under the arm" feel returns.

However, I just feel thankful, bearing all this in mind, that I'm here. Just wish others, as well as myself, wouldn't expect me to be "back to normal"! xx

Re: Surgery to take away lymph nodes and clear margins

Hi PaulyI'd get back in touch with whoever drained your underarm and go get it drained again. I had my seroma drained 3x before it stopped building up. Have you seen the breast physio yet? or are you still waiting on that? If so, think you're going to have to be a bit more firmly assertive, darlin', as you're struggling sooo much. Needs some specific stretching. Is the hospital far from you?Lots of love, Delly xxxxxx

Re: Surgery to take away lymph nodes and clear margins

Oh dear Pauline you are in a right mess is there anyone that can help and give you advice you must be in tottal agony when is it going to get easier for you God only knows, I know you are doing correct exersizes but try very hard not to overdo them because thats as bad as doing none at all.

I hope you enjoyed your meal with Alan and seeing your friend

You must be so bored and fed up with everything thats going on, are you all packed for your move so where are you moving to?

where are yolu having your Radio T but if your arm dont get right surely you will have a problem with the Radio so you really do need extra help to get your arm right I so feel for you Pauline

Re: Surgery to take away lymph nodes and clear margins

Also, should add, you will need to continue to do all the breast exercises once doing rads - as rads makes everything stiffen up again - in fact, I'm still suffering discomfort from them now and they finished on 19 Dec!!

Re: Surgery to take away lymph nodes and clear margins

I had mx and 17 lymph nodes removed on 19th September last year. It took 8 weeks before I was able to lift my hands above my head without discomfort! I didn't start the 15 rads until 30 November.

For rads you need to be able to clasp your hands together and then extend them above your head in a straight line.

Cording is painful but it does get better just takes lots of time. The exercise where you walk up the wall with your hands is one of the best - persevere with pain - but don't overdo it. Another good exercise is to place your hands on the wall at chest height and lean forwards to the wall until you feel pressure.

I used to do the exercises 3 times at day - breakfast, lunch and dinner - it does take time though.